Published
5 July 2024

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Improving Palliative Care for People with Advancing Heart Failure

While Isobel Jackson invited the conference to focus on quality of life and not targets, inevitably, a number of speakers reminded delegates that those holding the purse strings need to see the value of any collaborative project.

If the purpose of St Christopher’s Improving Palliative Care for People with Advanced Heart Failure conference was to inspire and enable colleagues in palliative care to work more closely with their cardiac colleagues, to provide patients with the best possible care, then if two delegates who spoke up in the final session were anything to go by, that purpose had been well and truly fulfilled.

Dr Heather Richardson, Director of Academic Learning and Action at St Christopher’s asked delegates to share what it was they needed to fire up inspiration in their organisation to make the idea of closer collaboration a reality.

Middle aged white woman, smiling to camera with short blond hair
Heather Richardson

A very honest delegate from a hospice said that her heart sank every time a heart failure patient is referred to her. “The heart failure nurse and everyone else disappears while we are left holding the patient,” she said. “Now we are going to go to the heart failure team and say can we do joint visits.”

This was swiftly followed by another attendee, who also works in palliative care, in a hospital, who said that as a result of what she’d learned at the conference, she was now going to send a colleague to the heart failure multi-disciplinary team meetings (MDTs).

What was it that motivated these delegates to act? What had they heard during the conference that moved them to want to return to their workplace and take immediate action to break down barriers and provide improved, integrated care for people with heart failure?

Here’s a summary of the key points

Heart failure is a growing, global issue

It affects 26 million people across the world, while in high income countries it reaches rates of 1-2% across the population, reported Carys Barton, Heart Failure Nurse Consultant at Imperial College and Chair Elect of British Society for Heart Failure.

Carys added that in the UK, 29% of hospital admissions for people with heart failure proved to be their last and that many of them had a significant burden of unmet needs, poor prognostication and no discussion of their wishes.

“Heart failure has a very high incidence of death in an acute setting. This is incredibly sad as it’s a long-term condition with indicators and we know it is life-limiting. Surely, we should be doing better. We have to educate each other so we can do better for patients making best use of limited resources,” Carys said.

Heart failure and palliative care professionals can make perfect partners

Challenging delegates, Carys said: “Why are we not putting palliative care in place for heart failure patients? We have to be treating these people holistically and in a more personalised way. We need to be working across a whole spectrum of services rather than in silos because that doesn’t give patients what they need.”

Since 2018, NICE guidance for heart failure has included palliative care.

Dr Laura Green, Senior Lecturer in Nursing, University of Manchester, recounted the success of a joint palliative care/heart failure project she worked on in Bradford, particularly highlighting how the expertise of the latter enabled the positive intervention of the former.

The palliative care nurses on the project asked their heart failure colleagues, with whom they were conducting joint holistic assessments, to consider which of their patients were likely to die in the next year. They predicted 70% would die and 89% of those identified did.

“It’s super important to know your patients because in this case that led to an increase in deaths at home,” Laura added.

Joy Ross, middle-aged white woman with curly brown hair smiling to camera.
Joy Ross, Lead Palliative Care Consultant
Primary Department

In another example of the collaboration between the two disciplines, St Christopher’s worked with heart failure colleagues across the community in Bromley, in a project funded by the Bromley CCG. Dr Joy Ross, Lead Palliative Care Consultant at St Christopher’s, shared the results.

“We did improve symptoms and started to address unmet needs. We reduced hospital admissions by a third, and halved bed days.  Professionals felt supported and the carer burden was reduced. GPs were picking up the phone to the heart failure nurse and having open communication and having direct impact on patient care.”

Several of the speakers highlighted the benefits of joint visits, with both heart failure and palliative care nurses. As Fiona Hodson, Nurse Consultant at St Christopher’s, put it: “By working together in this way we bring the best of both specialities. Patients can see it and we learn together.”

Iftekar Gogah, Lead Heart Failure Nurse Specialist at Princess University Hospital in Bromley, echoed that sentiment. “I would definitely advise joint visits as the preferred system as we get more confident working with the palliative care teams and it was reassuring for the patients for the heart failure nurse to introduce their palliative care colleague.

Timing is everything

That earlier intervention of the palliative care team was a theme running through a number of the presentations, perhaps best summed up by St Christopher’s Advanced Practitioner Heart Failure/Palliative Care, Isobel Jackson when she challenged delegates: “Here’s my provocation for the day: are you investing time or resources for those at the very end of life but leaving out the ones who could really benefit?”

She illustrated the point by sharing a filmed interview with Bill who cared for this wife with heart failure. “You need more advice so you can make the most of what time you have and to make it the best time.”

Watch Bill’s interview on being a carer for his wife, Clare who had heart failure.

Advance Care Planning and rehabilitation are just two of the possibilities that become available when introducing palliative care professionals at that earlier stage, as May Pheasant, Heart Failure Palliation Clinical Nurse Specialist, at Isabel Hospice, reported from the project she ran in Welwyn Garden City.

May said heart failure patients particularly benefited from a fatigue and breathlessness course they introduced at which they’d receive information and then complete the exercises. She cited the case of a 70-year-old man called Jerry, who also accessed hospice at home, complementary therapies and symptom control.

Patients and carers should always be at the centre but, remember, they’re all different

Joy and Isobel assessed the extent to which they had succeeded in putting patients’ and carers’ voices at the heart of their work and identified a real barrier.

“People with heart failure had low expectations and needed a sense of feeling known. For many, not feeling known was a real challenge.

“It’sreally important that we understand their wishes, and that the service is not just based on what we want. We need to establish what makes the biggest difference to them. While we can’t do everything, we can look at what’s having the biggest impact for them.”

Young white woman with brown hair smiling with glasses in front of stairs.
Isobel Jackson, Senior Heart Failure Specialist

Isobel shared her frustration and disappointment in finding that of the 373 papers on palliative care and heart failure published over the last 15 years, only two focused on the experience of the patient.

That was the starting point for designing the Croydon service as part of the Burdett funded project – to make a genuine co-design, while being conscious that all patients are different.

“You can’t group everyone together. There are so many differences, whether it’s age, wealth, sex or ethnicity.”

Communication is key

A desire for more information to help them ‘navigate a minefield’, was a commonly shared gripe of patients and carers, said Isobel. “They want honest dialogue and more information,” she added.

Eileen Arbenser, Heart Failure Specialist Nurse, Croydon NHS Trust, concurred: “We now understand the benefit that they need to understand they have a chronic condition – letting them know what their journey will be like in the early stages, so they appreciate it and embrace it. It also helps us to plan better.”

That need for greater and better communication extends to fellow professionals too. Palliative care nurses can give their heart failure colleagues the confidence to make patients more aware of the services on offer and to have meaningful conversations.

May Pheasant recommended making a plan for everyone involved in heart failure to know about palliation and vice versa.

The final means of communication that all concerned need to focus on is to champion the need for, and benefits of, integrated services.

As Heather Richardson said: “We’re very poor at marketing ourselves. We have unconscious competences like having meaningful conversations and giving people a dignified death, so we shouldn’t be backwards in coming forward. Instead, we should be approaching other disciplines and saying, ‘how can we help you?’.

True integration is all about relationships

“Have we achieved integrated care?” asked Dr Chris Bell, a consultant at Croydon Health Services NHS Trust, about the project he’s worked on with St Christopher’s.

“In a soft way,”  he added, answering his own question. “This has been a relationship building experiment. Whether it’s conversations in MDTs or dialogue about patients outside of that. We’ve never had to fill in forms which has been a breath of fresh air. Effective integration is all about relationships.”

Having developed that relationship with colleagues from St Christopher’s, and knowing that holistic care was available, Chris said his team felt better able to think about long term planning and better equipped to help keep people out of hospital.

Think differently and be prepared to bend the rules

May Pheasant and Claire Morgan, from Isabel Hospice and Dorothy House Hospice respectively, demonstrated that there are a number of different ways to set up a joint service, both acknowledging that there were challenges and barriers along the way.

May said: “It was sometimes harder to convince palliative care colleagues than heart failure ones that they needed palliative care. It was very much about learning to understand each other’s roles. Not just putting people into silos.”

She encouraged delegates to adopt a creative collaborative approach when trying to engage colleagues from another discipline. “It’s about bending rules to find a way around. So rather than just asking a busy colleague to do something, say, ‘can I help you to find capacity.’”

If it’s in the patient or carer’s interest, having the confidence to bend the rules, can definitely be the right option, Isobel Jackson said and Bill, the carer, concurred: “She would always explain how to make things easier, not just for me, but for the whole family. The rules are there to guide, but sometimes need to be broken so you can get to where you need to go.”

Nice story, now show me the data

While Isobel Jackson invited the conference to focus on quality of life and not targets, inevitably, a number of speakers reminded delegates that those holding the purse strings need to see the value of any collaborative project.

“Data, data, data,” was how May Pheasant put it. Laura Green said the more data the better, urging colleagues to, “Collect, collect, collect.”

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